Research from the University of Oulu and Oulu University Hospital in Oulo, Finland, found that patients with PCOS had a 47% higher risk for overall mortality than women without PCOS.
They also found that the mortality due to diseases of the cardiovascular system increased by 67%, while mortality due to tumors increased by 38%.
The researchers say that awareness and funding around PCOS are desperately needed.
Polycystic ovarian syndrome (PCOS) is the single most common endocrine condition in women of reproductive age globally—with an estimated prevalence of between 5% and 15%, depending on criteria. Despite how many patients it impacts, its “etiology and pathophysiology…are not yet fully understood,” according to a 2023 review in Current Nutrition Reports.
Beyond PCOS’ association with fertility complications and mental health issues, new research presented at ENDO 2023, the Endocrine Society’s annual meeting, found that the condition increases overall mortality, revealing just how necessary resources around prevention and treatment are.
A closer look at the study
The researchers conducted a registry-based, case-controlled study to assess the risk of increased mortality in people with PCOS, aiming to add to the limited literature on the topic. According to a study abstract provided to MDLinx, “women with polycystic ovary syndrome (PCOS) are burdened with multimorbidity, but there is only limited knowledge on mortality.”
First, the researchers identified 9,839 women with PCOS (and 70,705 controls) for the study through the Finnish Care Register for Health Care (by utilizing the International Classification of Diseases, Revisions 8, 9, and 10 (ICD-8, ICD-9, and ICD-10), and conducted a “1:3 matched case-control study,” to see “whether women with PCOS have increased all-cause, or cause-specific mortality compared to women without PCOS,” the abstract notes. The participants with PCOS and the controls were matched according to their birth year and where they live.
The researchers’ register covered the years 1969 to 2019, and it was found that 1,003 controls and 177 women with PCOS died during the follow-up period—with the PCOS group dying “significantly younger than the controls,” the abstract notes.
“The major finding of this study is that women with PCOS had 47% higher risk for overall mortality than control women,” study co-author Terhi Piltonen, MD, PhD, of University of Oulu and Oulu University Hospital in Oulu, Finland, told Newswise.
“The mortality due to diseases of the cardiovascular system was increased by 67% and mortality due to tumors by 38% when compared to the control group,” Piltonen added, noting, “Increased risk for death due to cancers….is something we need to replicate and investigate further.”
In the unadjusted analysis, the researchers also found that patients with PCOS had an increased risk of dying from endocrine, nutrition, or metabolic diseases. In the adjusted analysis, they also found that PCOS led to an increased risk of mortality due to diseases of the circulatory system. Patients also had an increased risk of dying from diabetes and bronchitis.
“PCOS is a severe, lifelong syndrome that increases mortality,” the authors write in the abstract. “More emphasis should be targeted on the prevention and treatment of diabetes, circulatory diseases, tumors, and respiratory diseases in women with PCOS to reduce the mortality risk.”
It's important to note that this new research should be discussed in full with patients, and each patient's full medical history should be considered. This study was long-term, but it only followed about 200 women with PCOS, and further research on the topic is needed.
PCOS awareness, diagnosis, and treatment
PCOS diagnosis criteria generally requires two of the three following symptoms: Irregular or no periods (due to not ovulating), high levels of male hormones (causing facial or body hair or thinning hair on the scalp), and ovarian cysts, according to the Centers for Disease Control and Prevention (CDC).
Even though PCOS is common, many women report delays in diagnosis and a lack of information around the condition. “These gaps in early diagnosis, education, and support are clear opportunities for improving patient experience,” says The Journal of Clinical Endocrinology and Metabolism. “Unfortunately, the syndrome is underdiagnosed and appreciated,” Piltonen says.
MDs should seek out the International evidence-based guideline for the assessment and management of polycystic ovary syndrome (PCOS), she says, and that she and her team support MDs using the “Rotterdam criteria, where 2/3 criteria is enough to establish the diagnosis after excluding other causes for the symptoms.” Thus, Piltonen says MDs should consider “irregular cycles, hyperandrogenism (biochemical testosterone measurement or clinical, namely hirsutism), and polycystic ovaries or high AMH levels” when considering a PCOS diagnosis. Piltonen also says that if one of the three symptoms aren’t present, “you’ll need measurements (testosterone and/or anti-müllerian hormone, and possibly [an] ultrasound),” she says.
“All GPs should be aware of the syndrome, as it is the most common endocrinopathy in women with vast morbidity and increased risk for poor work ability and early retirement,” Piltonen says. Firstly, it’s important to simply increase PCOS awareness in order to prevent patients from running around to different healthcare providers, she says. Further, “There should be a holistic approach that starts early on,” including nutrition education, mental healthcare, and laser treatments for hair, she says.
She also notes that MDs should help patients understand that assisted reproduction technology can help achieve pregnancy.
In order to better serve patients, Piltonen emphasizes that PCOS awareness is key and that research funding is “desperately needed.”